Scared :(

Hi guys,

Pretty new to all this so plz bare with me.

I am 29 years old, I developed Asthma last year after being put through chemical menopause with meds for suspected endometriosis. (Turns out it was not endo at all!)

Anyway, every time I was given the zoladex injection, I ended up hospitalised for a week with severe chest infections.

This happened every month for 6months until the injection stopped, and finally Jan 2014 was my last admittance.

I had my lung function a week or so ago and the results were shocking. I think it was my FEV (?) that was at 53%.

I was sent for an emergency lung ct scan the day after and I'm due to get my results today.

I've already been told on the phone that there is extensive damage (not cancerous). they have a name for it but they can't tell me over the phone.

I am absolutely terrified to say the least, I'm scared about what're future holds for me, and for my kids as I'm a single parent.

Part of me wants to know and another part wants to hide away from it and not go. 2pm feels so far away!!

Any advice to help me get through today and the immediate future would be much appreciated. Many thanks xxx

12 Replies

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  • Hi welcome Do hope you have someone going with you so they can listen to things you might miss .if there's anything you don't understand ask for it too be written down take a list of questions with you

    Good luck

    Dorothy xx

  • Take a deep breath and breath! You have had the news you needed -its not cancerous. So now you need to just try to put it out of your mind until 2pm! How impossible will that be?

    My husband has severe COPD and was diagnosed about 12 years ago - our youngest was only 2. His FEV1 is down to about 25% but the good news is - He is still working full time, he is very active - just a lot slower than most others! We still go out as a family and have great fun. Yes he has started to use a scooter and that is great - he can whizz off faster than us now! It might not be as bad as you fear.

    Sending you lots of love, hugs and the very best of luck, please let us know how you get on. Take good care, TAD xxx

    PS the BLF helpline nurses are very good and might be able to offer you some advise.

  • Thank you for replying!!

    My neighbour is taking me today, I am to see a new consultant, but my asthma nurse, who I know quite well now, will be there. (Which I find odd because she has her own Clinic and patients today!)

    It's good to hear your husband is doing so well Tad! :) I hope he continues to do so!

    I think I've heard the words lung damage and all I can picture are the very poorly people I've seen in hospital.

    My biggest concern is my children as they are so young, I don't want to leave them without any parents!

    I think once I know what it is I'm facing I will ring the helpline to see what other support is out there.

    I did ask on the phone if it is COPD and my nurse said no, leading me to wonder if it is ILD, not that I really know the difference!!

    I am so curious but so scared at the same time.

    I will of course let you know how I get on.

    Thank you so much for your kind words. Xxx

  • It is great that you are finding out relatively quickly what is going on. I understand your fears, but let's see what they say so you know what you are dealing with. Try not to worry too much just yet and let us know how you go. Best wishes and you will be in my thoughts. Best wishesxxx

  • Afternoon.

    It can be really frightening but what ever they tell you exercise can improve things as people on here will testify to. My Fev1 is about 20% and I'm still here. Get yourself active, healthy diet, and stop smoking if you do. Your not going anywhere just yet. Make sure you come back and tell us, we are all here to support you.

    Kim xxx

  • Hi Charleyct

    I have just read your post at early 3pm so hopefully the anxious wait is now over.

    I too am a single mum with chronic asthma and severe COPD. When I got my diagnosis 6 months ago I, too, was in total shock - all sorts of things going through my mind.

    But I have accepted my diag and just get on with things as usual, keeping fit, eating healthy, taking my meds and just get on with life.

    To me it is just a diag not a life sentence. Make the most of everyday! For me I treat everyday as an adventure as I never know how it is going to turn out!

    Let us all know how you get on there is a lot of support and help from this site.

    Kindness always

  • It is after 4pm now Charleyct so I do hope things were perhaps not as bad as you feared. You will always have such great support on here as there are many amazing people who will do their best to get you through this. Please let us know how things went when you feel up to it. Bless you and your family. xxxx

  • Thank you all for your support and kind words. I was reading the comments on the journey there and they helped to calm my nerves.

    It took a while at the hospital as had to have loads of blood taken after the appt.

    I don't think it was as bad as I feared, I'm not really sure! Feeling very confused at the mo.

    They have said that it's respiratory bronchiolitis-interstitial lung disease.

    A fairly mild case from the impression I got.

    (I also was diagnosed with severe asthma last year)

    I was (stupidly) a smoker until I had my ct scan, (2weeks ago) I am currently using nicotine replacement to help give up.

    My consultant said that giving up smoking could make the damage go away, but I thought that once lungs are damaged they cant be repaired?

    Am I wrong?

    Does he mean that giving up will slow or stop the rate of the damage? Or will it literally go away?!

    I have to have my lung function/allergy tests again and another ct scan in 3-6 months, and if the shadows are still there then I'll have to have a biopsy, which scares the hell out of me!!

    Anyone happen to know of any good sites with Info on regarding RB-ILD? I'd not heard of it before!

    Or is BLF the best place to go?

    Thank you all so so much again. Would not of coped today without you all.

    You are all in my prayers xxx

  • That still sounds very stressful - bet you are glad it is over now! Fantastic giving up smoking! I am not sure at all about the damage going away - I would recommend getting the opinion of BLF. The nurses will be able to explain the diagnosis to you. Take good care, TAD xxx

  • Thanks for letting us know and great news that the consultant thinks it will get better on stopping the smoking. Yeah, good idea to ring BLF to discuss your questions further. I wish you all the best and stay off the cigs. Hugsxxx

  • Phew! bet you're relieved that's all over! Like everyone else, I recommend TRYING to not worry and get stressed. Ha ha ha....my friends would be screaming with laughter if they saw this as I am the Queen of worry ....but, being 76 I can tell you from experience it's a total waste of time, and does you no good whatsoever. I am a single Mum also, so I know how stressful that can be. I had no family backup so I always panicked about what would happen to the children if something happened to me, etc. But, here I am, we got through it and I am still around.....frail, but OK. You don't want to hear about me, but I just want to try and encourage you.......keep posting, keep smiling........and keep breathing :)

  • well done in getting through the day and great you are now a no smoker :)

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